My two older girls have been taking horseback riding lessons at Columbia Equestrian Center for almost a year and a half now. My regular readers may remember that, about six months ago, Miranda had a fall that was pretty scary for her, and we had to take some time to work through that. At that lesson, our amazing first instructor, now friend, Courtney, asked if I wanted to get up on the pony Miranda had been riding while she took a few minutes to compose herself after her fall, so I did – and, to my surprise, I found it to be both challenging and fun! Due to the pricing structure, I realized it would only cost me $15 per lesson to ride with them, so I started doing that. I needed to be there with them anyway, so I might as well ride, too!

And over the last six months, I’ve discovered that riding is more than just “fun” – though it is that, too. In so many areas of my life, I am in a role of authority. I spend a significant portion of my life teaching my kids, coaching other parents, and meeting with and listening to and offering advice to other women.

In horseback riding, I am the student. I’m not the expert. As Miranda told me one day this summer, “Mom, everyone at the barn is better than you!”

I need to be the one asking questions, needing to have someone check my saddle to make sure I’ve tacked up correctly. I need to try to weave at a trot but drop into a walk before the last pole three times in a row and have to ask Emily, our awesome current instructor, what I’m doing wrong and why that keeps happening, so she can explain it, and I can go back and try it again and fix it.

I find that I lack even the self-awareness of all the things I don’t know, and this week was a prime example. I had had only a vague idea that which saddle you use matters, but this week I rode with a close contact saddle, which I’d never done before. When Emily asked me to post without stirrups, I burst out laughing the instant I tried – it was so much harder! There would have been no better way to learn that which saddle you use really matters!

There is a sense of vulnerability inherent in being the one who doesn’t know what’s going on and doesn’t have the answers. I ask other people to be vulnerable all the time, and I have no right to do that if I’m not willing to sit in that place, too. I need to practice being vulnerable myself, and in learning to ride, I’m doing that. I take lessons from Emily and go ride with Courtney and try to follow their instructions and put myself in a position to learn and try to grow a little bit more each time.

Having to listen to and learn from someone else is good practice for me. It keeps me humble. I need reminders that I do not know all – or even most – of what there is to know. And those reminders carry over from horseback riding into the rest of life.

I need to practice perseverance, practice literally falling off and feeling stupid but then getting back up and trying again…and then calling Courtney to talk through it with her. I need this experience of working at something and growing and getting better but so slowly.

And over the last six months, I’ve found that I’m having a lot of fun. I enjoy riding itself. And I enjoy learning new skills and being challenged and having new experiences. This new activity has been good for me, and I’m looking forward to continuing to learn and grow through it.

This girl – she feels everything BIG. That presents us with some significant challenges. She and I and Matt have spent years trying out and cultivating strategies to walk through them well. But also? We’ve held onto the hope that those big feelings were going to translate into big empathy and into big triumphs, and we’ve cast a vision for that as we’ve talked with her about how God made her and how she is wired.

And sometimes we see glimpses – or even more than glimpses – of that hope shining through.

This morning, her three younger siblings were experiencing some conflict, and Madeleine CaiQun was left in tears. She and Miranda disappeared upstairs, and when they came down, Madeleine CaiQun came to me for some hugs and comfort, and Miranda went into the living room to talk with the littles.

Miranda came to me a few minutes later, “Mom, MeiMei told me about how she was feeling when we were upstairs in the luminescence room. The luminescence room is kind of like club house we made on the bottom bunk in our room where we can talk about feelings. We were petting the cats up there for a few minutes. And when we came downstairs, I talked to FangFang and Atticus. They didn’t want MeiMei to play with them, because their building wasn’t big enough, so I helped them make it bigger, and they said she could play now.”

And a bit later, as our all-three-year-old-boy child was attempting to destroy all the buildings, she took the initiative to create a “scrapyard” for him, full of creations for him to knock down.

Kindness, empathy, initiative, problem-solving, creativity, peace-making, and helpfulness – all things I hope and pray for as I parent my kids, as we walk through squabble after squabble, as we talk about how we can work as a team to solve problem after problem. It’s so encouraging to me as a mother to have these moments in which I see glimpses of the fruit of that. We’ll keep pressing on, working together to grow, and hoping for more and more of these moments.

We’re several weeks into our homeschool year for 2018-2019. This year Miranda is in 3rd grade, Madeleine CaiQun is in 2nd grade, FangFang is in pre-k, and Atticus is in preschool.

The idea of really doing school with all 4 kids was a bit intimidating for me, but so far I think we’re easing into it pretty well!

The big kids are able to do more independent work this year, so each morning they wake up to a list of their independent assignments for the morning, usually consisting of:

Math – Miranda is finishing up Singapore 3B, where she’s learned about multiplication, long division, fractions, area and perimeter, and more, and she’ll start Singapore 4A soon; and Madeleine CaiQun is working her way through Singapore 1B, doing some addition and subtraction and just starting to learn about multiplication and division. I teach any new concepts, and then they do their exercises of practice problems on their own.

Handwriting – Miranda is continuing learning cursive, and Madeleine CaiQun has just started learning cursive, both using Handwriting Without Tears.

Bible – some independent Bible reading.

Reading – some independent reading that corresponds to what we’re reading in our general History curriculum.

I try to work with FangFang and Atticus a couple times a week on their workbooks. We’re using Sonlight’s Developing the Early Learner series, which I think offers some good initial fine motor skill and “following directions” practice.

Everyone gets a break after we tackle those “table subjects,” and then we reconvene to start with the little kids’ “reading school.” We read a Bible story and a few stories from some of their school books, and we call it a day for them! We’re re-using Sonlight’s P3/4 package from a few years ago from back when the big kids were doing pre-school, and it’s been fun for all of us to revisit those great stories.

And after the little kids’ reading is done, the big kids and I settle in on the couch to tackle the rest of their school time. We’re continuing to use Sonlight curriculum for all of our core subjects, this time using Core D, Science D, and Language Arts D. Core D covers the first of two years of American History, starting with studying Native Americans and going through the 1850s. Language Arts D works with Core D, with the writing and dictation examples corresponding to one another. We’ve done some different Language Arts programs over the last couple years, so it’s a bit of a jump for the kids to get back into Sonlight’s Language Arts, and while there has been some frustration about that, they’re able to do the work, and it’s nice to have the inter-relatedness of all the areas we are studying. In Science, we’re studying biology, taxonomy, and human anatomy, and both girls are enjoying that, as usual.

I still need to add Spelling, Typing, and Chinese back into our regular school days, but I’m thankful we’re getting pretty well-established with the basics. It was a rough start – we got through one week of school, and then FangFang broke her femur, and we had a very intense couple days with a lot of pain and not much sleep. When I had her pain well managed, and I could keep her still on the couch, she did alright, but when I needed to move her or pain meds started to wear off, she was pretty miserable, and in addition to caring for her, I needed to reassure all of our other kiddos that in spite of the increased attention I was giving to FangFang, I still loved them, as well. It was quite a stressful start to our second week of school, but it was all made much more manageable when my friend Courtney came to help out – she walked in the door and announced that she was taking the other 3 kids to Bonkers for the afternoon, and I should try to nap with FangFang! Being a bit of an emotional mess when I’m tired, I instead sat down on the couch and cried with thankfulness, but after I had a good cry, I was able to rest a bit, and that made the entire rest of the day feel so much more manageable.

And thankfully, FangFang started to feel better after a couple days, and we were able to get back into our school routine. Now, a few weeks into everything, I feel like we have a pretty good routine established, and I’m excited for the year ahead of us!

After our time in Omaha, we headed off to phase two of our summer travels – a few days in South Dakota! Since we don’t live near any of our extended families, most of our trips have been focused on traveling to see them, but especially as our kids get older, we want to make it a priority to show them more of the world, as well. We thought that with the ages of our kids, a trip out to South Dakota could be a good fit – some tourist attractions and opportunities to learn about nature and history but no long days in museums (which would be heavenly for Matt and me and much less so for our children!), and it was close enough that we wouldn’t have to drive forever to get there.

We left Omaha on Saturday morning and drove out to Wall, South Dakota, where we were joined by my mom and brother David – it was so nice to get some time with them on this trip, too! After a night in the hotel, we got up and visited Wall Drug the next morning. The kids actually did a great job of browsing and enjoying the experience without asking for 50,000 toys, and at the end we let them each choose one item that we’d buy for them.

Then that afternoon we drove through the Badlands, which were beautiful beyond what I can describe.

Had I realized we’d be able to get out of the car and climb around, I would have put everyone in shoes other than flip flops! It worked out alright, though 🙂

For the rest of our time in South Dakota, we’d arranged to stay at an AirBnB, which, we’ve discovered, is really what makes vacations work for our family. Spending days at a time in a standard hotel room is too overwhelming, but having more space and being able to prepare our own meals makes everything so much more manageable.

The morning of our first day on the western edge of South Dakota was spent at its most well-known attraction – Mount Rushmore! The big kids and I will be starting to learn about American history this year, and this was a great introduction, giving us an opportunity to talk about some of the presidents and a bit about the history of our country.

Knowing that we were heading into some red states and that we already stand out as a multiracial family with a child who sometimes uses a wheelchair, I intentionally did not pack any of the kids’ and my political t-shirts. I hoped we’d be at least a tiny bit inconspicuous. Miranda does not share that desire, and she and I had the following exchange while at Mount Rushmore:

Me: “Why do you think that they chose those four presidents to be on the mountain?”
Miranda: “Umm, because they thought they were good ones?”
Me: “Yeah, I think you’re right.”
Miranda, loudly: “Well, they won’t be putting Donald Trump up there, that’s for sure!”

We’re hoping the rest of the country comes to its senses and joins her in that opinion soon, as well.

We went from Mount Rushmore to Crazy Horse, which Matt had seen about 30 years ago but which the rest of us had never visited. It was fascinating to hear about its history and construction and the plans for its completion and to compare and contrast it to Mount Rushmore. There was a bus tour that allowed us to get close to the monument itself, and we were so glad we took advantage of that opportunity. The bus driver doubled as a tour guide and gave us more information and stories about Crazy Horse and its construction, and it was great to see a closer view of what was actually happening. Seeing a monument of this size being financed privately and in conjunction with efforts to support Native Americans was so impressive.

The next day we drove out to Wyoming to see Devil’s Tower, something to which Matt had been looking forward for quite some time! The kids really loved it, too. Miranda and Atticus are enthusiastic climbers, and Miranda talked a lot about coming back to climb it someday (we saw several climbers while we were there!), and she enjoyed any opportunity to climb on the boulders around the path we walked around the landmark…and I spent much of my day trying to keep Atticus safe while he attempted to follow her!

The following day I got up early drove out to Rapid City (everything is so spread out in South Dakota!) to meet a friend for breakfast, one of my co-moderators in the Facebook parenting group I help to moderate. It was a joy to sit down with someone who just gets it, who parents a child who has lived through trauma and who subscribes to the same parenting philosophy Matt and I use in interacting with our kids. It was so nice to meet her and spend a few hours together!

Our van’s brakes had been grinding, and it was in desperate need of an oil change, so after my breakfast date, I called around to local repair shops and sat around for a couple hours while our brake pads were replaced and oil changed – not super exciting but necessary. I didn’t get back to the rest of the family until around 2:00, which limited our afternoon options, but Matt and David researched some choices, and we ended up taking a scenic drive and getting out and walking around a bit. South Dakota is so beautiful!

The next day it was time to head out, so we packed ourselves up and started the long drive back home. We had one more attraction to see along the way – the Corn Palace!

And then after an overnight stop in Omaha on the way back, we made it home 🙂 Overall, it was a great family vacation time. There was some drama, but overall, the kids did really well with the driving time, and we really enjoyed our time as a family in South Dakota. It was so nice to have my mom and David there, too. The kids love hanging out with them, and though our night time adult hangouts were shorter than we would have liked, it was good to get even those little bits of time. We got to enjoy experiencing a new place together and talking about our country and its history. All in all, I’d say it was a successful vacation!

Did you catch that title? “Omaha 2018.” No subtitle. In contrast to our four trips to Omaha in 2017, my hope has been that this would be our one 2018 Omaha excursion – but I knew that would largely be determined by what we found out during this trip.

About a week and a half ago, we loaded up our minivan and packed up our family of six and drove out to Omaha, where we were overdue for FangFang’s annual OI clinic visit. World-class practitioners in multiple specialties related to osteogenesis imperfecta (OI) work together in Omaha to provide a clinic experience that, to my knowledge, is unmatched.

We arrived on Tuesday night, and FangFang and I headed to the hospital on Wednesday for the testing that would give us valuable information about her growth, her bones, and her body in general. This year was a light year in that all we needed to do was a dexa scan (which measures bone density) and a collection of x-rays (that check the status of the rods she currently has placed in both femurs, both tibias, and her left humerus; show us the status of her spine; and generally look at how her bones are growing and whether there have been significant effects from any recent fractures).

The highlight of the day for us was seeing FangFang’s former foster sister, Xiao, whom she knew in China before we ever met her. Our families have stayed in touch since the girls have come home, and we hope to continue to be able to schedule their clinic visits together and maintain this relationship for them. Our children from China have so little from their pasts – these connections that we can help them keep are so special. And in each other, they each have a friend who truly understands, who is living life as a Chinese adoptee with OI. Those connections will likely be invaluable to them as they grow and begin to negotiate the world with increasing independence.

We’d actually hoped the reunion would be even larger. There is a third sweetheart, Gabby, who lived at the same foster home as FangFang and Xiao in China, and she recently came home and was scheduled for her first clinic appointment at the same time as us – but unfortunately, her older sister (also from China, also with OI) broke her femur the week before clinic, and their family was unable to travel ☹ That was such a bummer – we’d been so looking forward to seeing all of them! There are a few other families with kiddos from China who have OI with whom we hope to continue to maintain connections, as well. We’re so thankful for these sweet moments between Xiao and FangFang – even at 3 and 4, they delighted in seeing another child like them, using a wheelchair, having scars from rodding surgeries, occasionally sporting a splint – we’re going to do all we can to continue to facilitate these connections for our kiddos!

While FangFang and I did that testing, Matt took our other kids to a park, and once we were done, they came back for us and we all spent the rest of the afternoon playing at the park.

In an attempt at frugality, I’d booked all six of us in a standard hotel room for our time in Omaha. While it was certainly frugal, it was also rather miserable. We were all on top of each other all the time, the kids had no room to run around or play, and it was just generally an unpleasant situation. We ended up spending most of the waking hours during which we were at the hotel letting the kids watch tv, because it was our best strategy to keep the peace. And now we know. We can certainly handle standard hotel rooms for a one night stop or something of that sort, but for any extended stay, it is unwise!

We debated how to handle Thursday morning clinic – whether all of us should go, so Matt and I could both be present for all of these doctor meetings or whether it would be better for him to take the other kids to do something more entertaining, and FangFang and I could focus, undistracted, on our conversations. It would have been great to have both of us there for all of our conversations, but ultimately, we realized that as the researcher and doctor-appointment-attender parent, I was probably going to be negotiating 95% of those interactions, anyway, while Matt parented our kids, and it would probably be easier for him to parent them somewhere other than a hospital room 😉

FangFang and I were at the hospital by 7:45, and we got to chat a bit more with Xiao and her family before clinic started.

After a nurse got FangFang’s height and weight, we were taken to a room that would be our base of operations for the rest of the morning while doctors and other providers rotated around to talk with us about their individual areas of expertise as they related to FangFang.

First up, we saw Dr. Esposito and Dr. Wallace, the orthopedic surgeons. I knew that their assessment of how her bones and the rods she’s had inserted into many of them (both femurs, both tibias, and her right humerus) would largely determine whether we needed to make a planned return trip to Omaha any time this year – and, thankfully, they don’t believe that will be necessary! Of course, we may end up back there anyway – a significant fracture requiring surgery would mean a drive to Omaha for Dr. Esposito and Dr. Wallace to operate – but we at least don’t need to plan anything now! Her left femur rod is the one they have the most concern about. It was the earliest placed, and the surgery was done in China, and it will likely be the first to require revision, but they said that as long as she isn’t experiencing pain or limping, we should leave it alone. We looked at her spine, and her scoliosis is not particularly severe, and the wedging we can see on x-rays has improved in the last year, largely due to the Pamidronate treatments she receives. Essentially, everything looks pretty good from an orthopedic perspective!

We also met with a researcher for a 5-year longitudinal study being done out of Omaha, in conjunction with other research sites, collecting data about individuals with OI to use in research studies, and we’ll have FangFang start participating next year. There is not a great deal of research available related to OI, and we want to do anything we can to be part of developing that, hoping for more and better treatments in the future.

The endocrinology team was very happy with the improvements in FangFang’s bone density shown by the Dexa scan. It’s actually a bit confusing, knowing what the level of improvement was – there is a discrepancy between what the 2017 report shows as her 2017 measurements and what the 2018 report shows as her 2017 measurements, and no one was quite sure why. But, regardless, her 2018 numbers show either a 15% or a 30-40% increase over her 2017 numbers, so we’ll continue with her same level of Pamidronate treatment.

We also saw a dentist and a dietician. The dentist continues to see no OI-related issues with FangFang’s teeth, which is great news. And the dietician talked with me about our diet and what FangFang eats and what her growth trajectory looks like, and she was happy with all that we’re doing, so no changes needed there.

The physical therapist was also very pleased with what FangFang is doing and what we’re working on with our local physical therapist, which was great news! The occupational therapist recommended an OT evaluation and maybe 4-6 sessions of OT at home to work on underlying core strength and skills – grip strength, endurance, screwing and unscrewing. I’m not thrilled to add likely another appointment to our weekly routines, but it’s definitely a good idea to address these things as early as possible, so we’ll see what we can do!

Overall I was very encouraged by the clinic visit, knowing that the Pamidronate treatments are having the desired effect, that her bone density is increasing, and that we likely don’t need to return to Omaha until next year for clinic. That’s pretty much the best report we could hope for!

After clinic, Matt took the younger 3 kids back out to play at a park while Miranda and I stayed back at the hotel room. She did some math and some art while I put in a couple hours of work and then napped. Another consequence of that whole six people in one hotel room arrangement was that no one was getting great sleep!

Friday was a really good day. We’d planned to meet Xiao’s family at the zoo, just to hang out and have fun, and that we did! Another family in town for OI clinic joined us, as well, which was great! They’d traveled all the way from the Bahamas for clinic, making our 5-hour drive look like nothing! The kids loved running around and the zoo, and we’d heard great things about the it, and it did not disappoint.

It was great to have this time to consult with these amazing OI-care experts and so good to connect with other families with kiddos who have OI. We were so thankful for our time in Omaha!

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Meet Alison

I'm Alison, wife to one great guy and mama to four precious kiddos. My days are spent loving and caring for those 5 and anyone else God brings into my path, and as I read books and explain math, wipe noses and change diapers, teach and pray, correct and celebrate, I also contemplate and share my thoughts in this space. I'm so honored that you're here!